Welcome to my journey with Neurofibromatosis type 2, known as NF2, a genetic mutation which causes numerous tumors to grow within my brain and spine. Since 2004, I have undergone radiosurgery and 3 brain surgeries for 7 brain tumors. Life with NF2 is definitely a test of faith and a challenge to keep positive. Join me on my harrowing adventure to keep active and live life to the fullest!

Saturday, August 20, 2011

This post is dedicated to my fellow NF2 friend and runner Olivia who is struggling with some of the same feelings and issues I encountered after radiosurgery in 2004. Don't give up and don't give in!

For those who have been with me over the long haul, you know most of the story that brought me to this chapter of my life. For those who don't, let me brief you on how I arrived at training to run a full marathon - something I could have never seen myself doing 7 years ago.

Question??

Was I always a runner?

Well, not exactly. I guess it depends on how you define what it means to be a runner. While I did run on the cross country team and long distance events for track my senior year in high school, my running after that point consisted of occassional running over the years to try to stay in shape. (And by that I mean a weak attempt as I grew older to try canceling out that freshman 15+ that tacked on to me and seemed to ride along for the next 15 years!). Beyond some of my undergrad college years, running became maybe an annual 5k event. I have no idea if I ever ran 10K distance up until 2009 when my fellow cancer survivor buddy and team in training teammate told me when he was in the hospital that he believed I could do it. So I did!

But let's back track to summer 2004 after I finished graduate school. I recieved the news in the spring that one of the tumors in my head got really damn big fast. Fearful that I would not live through a brain surgery or even worse....become physically and maybe even mentally screwed up, I opted to take an avenue that I expected to be a kinder and easier approach. WRONG! It is a long story but let's just say I got sick for a long time which included loss and impairment of many of my "normal" ways of functioning. I was pretty devastated and spent a long time being lost and walking around like a zombie. I felt like my soul was dead and I was just a shell of a person walking. My soul ached when I could not be hiking in the mountains anymore, could no longer have the stability to scuba dive, and roller blading was just plain over.

In my sadness I walked myself into recovery. Thankfully I had my dogs to get me through my heartache. In addition to adding joy to my life, our walks gave me a good excuse to spend an IMMENSE amount of quality time with them and feel I was still serving a purpose.

Anyhow, in the photos are my new shoes which are actually only my 2nd pair of marathon running shoes! I have worn the same pair through 4 half marathons since I started running them in 2009. For me, making a major purchase takes me a long time. I am too indecisive and worried if it will be the right choice. Happily, these shoes have gotten me comfortably at least 48 miles so far!

I snapped these photos in the Carnation agricultural valley where I started walking the dogs back in spring 2003 when we moved out to the country. Later I found the 32 mile railroad grade trail about a mile or 2 down the road which I eventually came to walk in an entire day following this whole rift in my life. It is also the place where I began to make a transition back to running.

As I mentioned, during my first recovery I spent much of my time walking my dogs daily. At one point I even had to walk with a walking stick! While I was out there taking time to rediscover myself, within a couple years I was inspired to become "inspirational". Hence began my shift into becoming a charity athlete. After losing my balance function, my very first running event was 3 miles around a high school track in a "Relay for Life" event for cancer May of 2006. After completing the last lap around the track I totally collapsed and could not stand up! I kept pulling myself up on a lawn chair and would continually come crashing down. The paramedics rushed over but fortunately with some hydration, after 10-15 minutes on the ground I was able to rise to my feet.

To train myself to even be able to run 3 miles, I had to run with my walking stick. Within 10-15 minutes of a run when I started back into running, I would become greatly disoriented with my legs quivering like jello and my eyesight flying all over the place. I would imagine the inability to properly walk after finishing would be comparable to what a person with cerebral palsy experiences. At least that is how I felt stumbling around deperately trying to walk straight during a cool down.

Many people without any real serious medical conditions or limitations remark to me how it is amazing I can run so far but comment how they could not possibly run beyond a 5k. You have NO IDEA what you are capable of! Yet neither did I once.

Running is not my favorite thing to do either. I do it because it has been a gift and a talent granted to me - a tool with which I can help others. Granted I am nowhere NEAR great runners but I CAN do it. I may be slow but hey! At least I am out there giving it my best shot and doing it for a greater purpose. When it hurts, I think of my fellow patients who are in wheelchairs or missing legs. I bet they would be damn estatic to have this ability! I know that must be how they feel as just going through losing my balance gave me a deep sorrowful longing to have uninhibited ability to do even lunges at the gym and all these fantastic things which were once so simple.

So why waste it?

Speaking of that, I need to get out here and shoot for that 16 mile run now that I have had 24 hours for my body to rest following 3 days of mountain hiking.

Wednesday, August 17, 2011

I suppose the pictures are self explanatory but if not, we were overjoyed to celebrate the 10th birthday of our dogs this weekend (they are brother and sister).

While you might find it comical or ridiculous that we went all out to have our own little "dog" birthday party in our little family, well that is just it......They ARE our family and our kids. As a matter of fact as I am sure all the parents and moms out there think of their grown children as their babies still, I am no different. hehe On ocassion I will shout out "puppies" and they come running!

Let me tell you the full story though. 6 years after gratefully experiencing cancer remission I was diagnosed with brain tumors. It started out as hearing loss and sadly the slow decline of hearing was not the only problem. My brain is LOADED! There are so many tumors that it has actually been quoted in some MRI reports "too numerous to count".

So that is a pretty heavy issue. On top of that, the disorder which causes my brain tumors is genetic. Not only is my health a consideration but also the health and future of an unborn child. So the consensus was not to become birth parents. Yet that had not sunk in my mind in the beginning.

Within the first couple years my hearing declined rather rapidly as far as hearing loss goes. I was warned that it was a very high if not most certain probability that I would become deaf (entirely with no sound). For most of my life I have been pretty social and talkative.

Harley wondered how this aspect of my personality would be affected. He was saddened that I may find life very lonely (and yes it does take quite a bit of an adjustment). So when my 30th birthday rolled around, he brought these babes into my life that brought me lots of joy as well as motivation for recoveries.

When you are a patient, a pet can give you so much love and fill a big gapping hole which has puntured your heart. When I got them and told my elderly neighbor stricken with cancer for the third time, he chuckled and said "Oh boy! That's just what you need!" I was not quite sure I completely understood the meaning of his words but now I do. He spent his final months sitting happily in the sun stroking his furry feline friend sitting on his lap with a big grin. That is pure joy...to be given unconditional attention and love no matter your disposition, your health, or even your presentation.

As the years went by and I lost all my hearing, went through many falls while losing my balance function and screamed my head off, many tears and fits of rage, days when I either could not get up from the daybed or go outside, days of puking my guts out and more crying, the frustrations of enduring recoveries through 1 radiosurgery and 3 brain surgeries, my babies have always been there to heal my heart. When I have been hurt either physically or emotionally, immediately they have come to the rescue licking my tears away until they turns into outburts of laughter.

So with this 10 year celebration, we say THANK YOU for giving me life and bringing us such incredible joy to overcome the heartbreaks this disorder has tested my family and I with.

Tuesday, August 02, 2011

I REALLY love hiking and do everything in my power to not miss anymore of my weekly hiking escapades with my cancer survivor friends. HEHE I make a point to try to schedule my medical appointments on days of the week which do not conflict with our Wednesday hike time. So I request appointments either at the end of the week or beginning so I am either back in time for a hike or leave the next day. For this last trip I made darn sure I went on the hike Wednesday, left on the train for Portland Thursday morning, and then took the train back to Seattle Tuesday afternoon following my morning appointment so I could be back on the trail again the next morning! :D

The exception is that I could not coordinate my NIH visit around my group hike day. They have me leaving early Wednesday morning August 24th for travel all day and then appointments on the 25th. :( grumble.....So I will miss at least one more group hike this season. Hopefully it will not be at too cool of a trail or at least something closeby that I can make up on my own time. (I do not drive too far anymore.)

I also have to figure this in to my marathon training schedule while ALSO doing strength training and working with a trainer once a week. I run 4 days a week with increasing mileage per week and as the week unfolds. So far I am keeping up but I drastically had to cut back on my strength training either cutting down the amount of days I go or greatly decreasing the amount of weight I lift or both. That is ok because what is important right now is that I have the energy and stamina to take on longer and longer runs. I had a difficult time last week with training immediately after a 4 mile run. My nutrition was off so I was so tired and felt weak having difficulty focusing during my session with Merrie.

This week so far I am only hiking one day because I am catching up on all the work I slacked off on during "playtime". Tomorrow I plan to be back out there again.

I forgot my camera in someone's car but cancer pal Diane Bowlin was nice to share a few photos with me of our Pratt Lake Basin hike last week.

A week ago I had to make another trip to Portland for my 3rd facial rehabilitation appointment with a therapist to
A) See if my face has improved any
B) See if I have been doing the exercises correctly and issue additional exercises and
C) Monitor if there is unwanted movement in the opposite side of my face which will inhibit function on the full paralyzed side.

I don't know how much I should really talk about it because I don't want to come off wrong as "the glass half empty" kind of gal and to detract my focus.

I will say that although not monumental, I did gain the tiniest little bit of dimpling at the corner of my mouth when I try to smile.

In any case, it was a great excuse to travel down to Oregon to spend quality time with my parents and also meet up with my friend Vaughn who I have not seen but briefly one afternoon during my recovery in June. Prior to my surgery, we had not seen each other since we met in May 2009 when my sister and I stopped off on our way back from the Eugene marathon.

Vaughn has NF2 like me and even had a recent brain surgery with the same surgeon in January. As a result of the latest surgery, Vaughn is new to complete deafness. We are a rare bunch so it is always great when NF2 friends can get together to share and swap stories, especially when there are similiarities that others may not understand.

Being the true pal he is, Vaughn traveled into the city to meet us at the zoo when my train rolled into town. What a great sport! I arrived in the afternoon and the zoo closed at 6 pm not leaving us a HUGE amount of time to see everything. Of course you have my mom "miss speedy walker" and then me "the marathon runner". LOL So we certainly gave Vaughn quite a workout while we covered it all! We had a fabulous time! Here are a couple snapshots of us.

Also, Vaughn came to my appointment with us on my last day in town. Afterward, we went to the rose garden to visit for an hour before my train departed back to Seattle.